Hi everyone, today im feeling a little bit anxious, my boy is back to school now and our life seems to be prety normal THANKS GOD, well today is one of those days that i get nervous, i was driving back from school and my son told me he was having a little bit of a headache, i always get this terrible sensation when he tell´s me that, am i the only one that experience that? im terrified of everything that hurts, i think ADEM could came back any time, am i the only mom that feels thats? H-E-L-P i know i over react but after all we been i cant control myself!
As some of you know we live in Mexico, but our ADEM doctor is in phoenix, last visit was in July and he told us everything was looking GREAT in the MRI that next appointment he didnt need an MRI (we have 6 MRI) just a simple appoinment, i ask about the constantly headaches (THEY WHERE EVERYDAY FOR 2 MONTHS) now he is having 1 or 2 a week, i know everything is going great but i cant help it SOMETIMES i start thinkins a lot of crazy things, i hope everyone is doing great, i hope you post how are you doing by now, a big hug from your Mexican Crazy friend!
That is totally normal. Our daughter had slow progression ADEM for 3 months before she ended up seizing and was diagnosed with ADEM. She had migraines galore. Well once we were released, she started getting headaches again and ended up relapsing badly. She has been cleared And not relapsed since November, but every time she says she has a headache, I cringe. We have had at least 10 MRIs and her doctor just scheduled another because she just got weaned off of prednisone and we want to make sure she hasn’t relapsed again. I think our job of worrying will never be over. But just be aware that it is common to relapse in the first 6 months after being diagnosed with ADEM. We ended up doing plasmapheresis, IVIG and chemo in November when she relapsed! The doctor really believes it is gone and keeps telling us to not worry! Prayers!!!
Em thanks for answering so fast, well Alex ADEM was on february and now he is off PREDNISALONE a month ago, everything is looking great just the headaches worried me, he says on scale from 1 to 10 he is 3 or 5 some times, i can not worried, IM A MOM like you, i hope everything is doing great with your daugther, God bless!